Monthly Archives: September 2013

10 Celebrities I would like to be stuck on a deserted island with:1. Cody Lundin from Dual Survival. Let’s face it, the man can make fire and water anywhere. He will also make sure that my next celebrity has enough ingredients to keep me fed.2. Curtis Stone. (Enough said, right?)3. Miley Cyrus. I am thinking we can call it a Desert Island Intervention. She cannot get rescued off the island until she remembers the Hannah Montana that made her famous and allowed her to twerk. 4. Dana @kissmylist she would help with the Intervention of Miley and would ogle Curtis with me.5. Robin Williams because who cannot have fun on a island with Mork?6. Carole King, she could not only teach Miley how to sing but wouldn’t the campfire (built by Cody) songs be great?7. Jose Cuervo, hello Margarita8. Ty Pennington to make a rocking hut9. Mark Wahlberg, just for the eye candy. 10. God. I think it would be great to be on a island with God, sipping a margarita pointing at Miley and ask:

What the heck were you thinking when you invented the twerk?

Now it’s your turn…you are on a deserted island tell me what celebrity would be stranded with you?

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I had a hard time with this mix-tape. Probably why it took me until Thursday to actually make my DJ list. Let’s face it. I do not “chill”. I don’t know when the last time I just sat and relaxed. I am always worrying, moving, planning, plotting my next moment. Yeah I have issues.So I have Jessica to thank, since she sparked my theme for the week. And then I thought….dumb ass of course IF you are going to relax and chill it would have to be with a Margarita and the master of Chill. Right?

The last verse in this song brings it all home to me: Some of it’s tragic, some of it’s magic but I’ve had a good life all the same. Who cannot relax with that going through their mind? But if you still need a little something to help you relax, may I recommend:

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Like many moms of a child with special needs I am a little worried about the changes Disney is having to make to their Guest Assistance Card policy. Here’s the thing though…I am not upset with Disney.

I’m upset with those who take advantage of a Company’s good will. How dare anyone make life more difficult for those who already struggle. To add insult to injury, there are those who state that our children “cut in line”.

Really? Hmm…I will gladly stand in line for a ride and have done so before and with Boo. So here is the deal I propose:

How about if Boo stands in line and you stand in her therapy appointment?

How about if Boo stands in line and you clear her airway when she chokes on her drool?

How about if Boo stands in line and you hold her on your hip because she is too week to stand on her own?

How about if Boo stands in line and you hold her down while she undergoes blood work, cardiac testing, MRI’s and other medical tortures?

How about if Boo stands in line and you do not look at her with condemnation because she cannot control her squeals, muscle spasms and vocalizations when she invades your personal space?When we traveled there last year I was amazed at how well they took our daughter’s needs into consideration. Each cast member was trained how to treat all patrons with respect and courtesy. We never expected to “cut in line” in front of those who stood in line, but needed to keep Boo in her stroller/chair until the last possible moment.

Just to be clear, in our experience the only “cutting” in line was when there was no feasible way to get Boo’s stroller/chair to the ride through the normal line. We stood in line, like everyone else, in attractions that had a safe method to get her to the attraction. Even when we “cut in line” we did not immediately get on the ride. Rather Disney allowed people who had been waiting to enter the ride and put us on in a reasonable (to me) manner.

When asked if Boo has so many ‘issues’ why would we even consider taking her to a theme park I have the following response: Well, for one, her sister shouldn’t miss out on life events because her sister needs some consideration. And two there is this….

Why shouldn’t Boo get to see the Magic of Disney just because she is unable to stand in line?

I agree there is abuse, like all great plans some fool has to mess it up. But it is not Disney’s fault. The Company really has no option to try and improve on their system. I applaud them for being proactive and for listening to the parents like me.

And I hope those who ruined this beautiful experience lose sleep tonight.

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I’ve been really hesitant to write this post. First, I hate to jump on a bandwagon. I also hate being late to a party, even a pity one. Mostly, though, I do not ever want to come across as ungrateful or one that complains.Truthfully, I have absolutely nothing to complain about. I am beyond lucky. I acknowledge that my situation is as wonderful as it is rare. I have a terrific village who supports my sanity. When life gets overwhelming I have some one within a text, an e-mail, a call or a walk to lean on. I get date nights with my husband and girls night in.

Not everyone is this lucky. They are isolated. They stay at home with their child, change how they go to Worship, do not attend family events, cannot find a babysitter and not even think about getting a pedicure. Moms like Kelli try to do everything right. They think that it is less disruptive for their child to stay home. They feel family gatherings are too hard to keep everything together and peaceful.

I do not know Kelli and only know about her circumstance from Julie, Jill and Kristi’s blogs. But I do know that not every child is like Boo. Some children with special needs are violent. They hurt themselves and those who love them the most.

When Kelli tried to kill herself and her daughter there was a lot of condemnation. People have a difficult time understanding suicide. Let alone a mom who tries to harm her child.

The sad truth is, Kelli is not the only one out there. Statistically children in the US with special needs account for almost 10% of those who are abused. And they are abused by their caregivers. This is not just the US. World-wide disabled children are harmed more often than typical.

This is just supposition on my part, but I believe the abuse and the killings and the suicides happen because the parent has little or no support. We are very lucky where we live. Our Boo has a terrific school, afterschool therapies and if she was autistic we would be eligible for in-home support. But those therapists and teachers deal with our children hitting, spitting and hurting them. Yet they love our kids. They want our children to succeed.

Parents and caregivers are becoming the walking wounded, suffering from post-traumatic stress of living and working with a child who punches, kicks, sets fire to the house and destroys relationships. We love our children. We hate what their disability makes them do.

There is a difference.

There is also a reason why persons who work with children and adults with special needs have an extremely high burnout rate.

While our children in the US have a tremendous amount of government support available (if you know where to ask) for them, there is zero support for the caregiver. I am not talking about financial. I am talking about emotional support. That shoulder that you need to lean on.

Since I have that support I know full well what those of you without it must be feeling. Know that you are not alone but you have to let us know you need it. My friends know because I go to them. I break with Boo’s therapists and vent to her aides. Sure a few will reach out, but the responsibility is mine to say I cannot do it on my own.

So I implore you, the Kelli’s out there, to know you are not alone. But you need to scream and raise the white flag.

And if you know a parent out there with a child who has special needs reach out. Stop by their house tonight with a pizza and a bottle of wine. Stop by and check in on them. Keep inviting them to events, even if they have to say no. Remember that e-mail is great, but you can hide there. Call, speak to them. Make sure they know you are available to listen without judgment.

Let what happened to Kelli be a lesson to all of us to reach out before there is no one there to catch.

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I deserve a medal for the time I didn’t kill David when he told me he was taking me to the theater. I got dressed up. And I mean dressed up. Short skirt, thigh-high nylons, high heels and did my hair.I looked like a tramp. But we were still in the dating, I want him to love me phase of the relationship. Okay, I probably didn’t look like a tramp. But if Allie ever wore that outfit I would lock her in the attic.Off we drove to Boston. Dinner at Legal Seafoods. I was feeling great and he takes me to the theater.The Omni Theater.

At the Museum of Science.

To see Everest (wicked cool).

Attended by a bunch of kids on some type of boy scout field trip/sleep over (not so cool).

The fact that I did not need bail money proves I deserve some type of medal.

I will take Olympic Gold please.

How would you finish this sentence? I deserve a medal for the time I…..

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I never realized how competitive I was until recently. I never seem to be happy with where I am. I always want more. Not necessarily more than others, but more of myself. I clean the house, I want it cleaner (I almost maimed Allie for using the bathroom after I had it company clean). I began running and it wasn’t enough to do a mile. Oh no, I had to do a 5k. That goal was accomplished but not well, so I signed up for more and more. I signed up David, too but didn’t tell him.

Why? Because I wanted to win. It wasn’t enough that I didn’t come in last (my first goal) but I want to beat him. The man who doesn’t train but is in naturally great shape. My next goal was to run 5 miles by October.

Last weekend I finally did it. Five FREAKING holy crap miles and it didn’t hurt. When I finished did I feel a sense of accomplishment? Nope, I set myself up to do 7 miles by the end of November. Next thing you know I will talk myself into setting a goal for a half-marathon.

What the heck is wrong with me? I mean seriously who needs to run 7 miles unless they are being chased by a serial killer.

Setting goals is supposed to get you to accomplish something, not become an obsession. I would write more but I have to get running….

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Yesterday while waiting for Boo in therapy there was a little boy who was walking around, in his own world and knocking on the walls. He was beautiful. It occurred to me at that exact moment that if I didn’t have Boo in my life I might not have noticed how absolutely beautiful.I would have looked away.I would have thought to myself what is wrong with that boy?

I would think, yuck look at that drool.

I would not have spoken to his mom, thinking I was sparing her embarrassment.

I would have been wrong and heartless and selfish. Because I would have thought to myself thank God Allie is ‘normal’.

Thankfully, I have Boo.

So I saw the beauty in the way the little boy comforted himself by knocking on the wall. I looked into his eyes and saw the light shining inside. I recognized his drool and realized it was because he was concentrating so hard. I spoke to his mom, asked how old he was, what school did he go to.

I made small talk.

Not about her son being in different, but how he was the same.

In that moment I was thankful that Boo had made me a mom with special needs.

I remember when I was pregnant and told that due to my “advanced” age my baby was at higher risk for birth defects (hate that word now), Down syndrome and a host of other scary things.

I opted for just the blood test and told God I could handle Down syndrome. But nothing scarier. Why Down syndrome? Not because I knew a lot of about it, but because children and adults with Down syndrome were the least scariest to me. I saw them in the playground, the market, in my life. “It” seemed manageable.

By the way, I realize how arrogant and condescending that sounds. Bear with me.

When the geriatric tests came back negative, I was relieved and moved on with my pregnancy. Then Boo was born and I learned that it doesn’t matter what your child was born with, a trip to the NICU is beyond scary. At that time I thought it was the scariest thing I would ever go through. Boy was I wrong.

It is also enlightening.

Being Boo’s mom has opened my eyes and my heart. I am a better person because I am a card carrying citizen of Our Land. When I see a child (or adult) not acting typical, I do not jump to the conclusion that the child needs discipline. When I see a parent at the end of their rope in the grocery store, I reach out to them. I learned that by never hiding Boo’s light I am opening our family and friend’s hearts to others in the community. Most of them have now banished the word retard. They are teaching their children to do the same.

My friendships are now more meaningful and important. I have become more vocal and more of an advocate. I have gained friends that I would never have come into contact. I have become more outgoing and outspoken. I certainly wouldn’t have begun blogging. Blogging opened up a whole new world of laughter and support.

All because of Boo.

Do I have moments when I wish that Boo had been born “typical” or with what I thought I could handle? Sometimes, but only because then I would have a tour guide who would know what path to take.

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This is, by far, the easiest post I have ever written. Boo has struggled since her first year to overcome sensory issues. She doesn’t have a severe disorder that impacts our daily life. Jen Kehl can tell you more about that.We are not alone in our navigating how to expose Boo to the sensory input she needs while balancing her innate fear. If you are a visitor in Our Land you will see a lot of other examples of having a child that is afraid of hair. Boo doesn’t so much suffer from her sensory issues. It is more like she avoids them and it is easy to do so. For example, snow. We do not have a lot of it, well except when Nemo killed our February vacation. Grass? That was the best defense against Boo’s bolting. I really was kind of upset when she overcame that fear.

Boo still has issues with a lot of sensory input. Be it noise, texture, smell or sand. Boo despises getting her hair brushed, as one example. She has a paralyzing reaction to sand. You can feel her heart racing, she whimpers low in her throat like a cornered animal. With a lot of therapy during and after school, Boo worked really hard to overcome her fear.The difficult part of this is that Boo doesn’t realize she is afraid. She doesn’t have that comprehension. She only knows that she “no like”. But we live surrounded by the beach. This was one fear, unlike snow, that she had to overcome. Selfishly the rest of the family really enjoys the beach. In truth, we kind of forced her to like it. The first few attempts were horrid. But we persevered. Every time we got to the beach she would whimper. We forced her out of the Jeep a couple of times over the summer. She would sit on my lap, but eventually (sometimes it took hours) she would stand on the sand. We kept it easy for her, always in her sneakers. Never forcing her to do more than she could. And then, my friends, Boo danced.

This is how I finish the sentence, My best summertime memory this year was Boo dancing on the beach.

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I’m very nervous. I know you are thinking Kerri you have a blog of course you want exposure! But Blogger Idol? First I am not sure I am very qualified. So why am I auditioning for Blogger Idol?Quite simply, I don’t like doing things that are not worthwhile. Also I am a fierce competitor. Just ask any of my Words With Friends opponents.But more than that, I want to have my blog be the best it can be. By participating in Blogger Idol I will receive peer feedback. Not just a great post, Kerri. But a true critique of where I can improve, maybe a better way to get my message across and honestly there are some prizes.Also I will get some exposure. Quite frankly I don’t want the exposure just to have more followers. I want to interact with parents, both those with special children and those with typical.Here is an example, last week I was in tears when I wrote “Red” about Allie my typical child. I was in tears when I wrote about wondering if I was making Boo more handicapped than she is. I received such a response from people that in both cases, they navigate the same waters with their children. Both typical and not so typical.That is the type of follower I am craving. One that gets life with Boo and Allie. Then there are the prizes. Hello, prizes! Design, blog management, pintrest (what the heck is Pintrest? I am sure crafty Auntie K knows), Pic Monkey, Baconery (David will love that one) and Amazon. Hello Amazon! Kindle I can start paying for books again. Although Boo will probably request a musical. I am warning all of you now, I will be a beggar. I want the critique. I want the prizes. But more I want to meet moms like me. Ones who don’t know what the heck they are doing but trying their best.So pretty please, vote for me. Vote often. How can you help? On Facebook go to http://www.facebook.com/bloggeridol and tell them that Undiagnosed But Okay has to be a contender. Also follow me on Twitter @undiangosedbut and retweet my submission. I warned you I would grovel!

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Going into the file of things I never expected to be asked by my daughter….Allie: What’s a hickey?Me: What? (almost driving off the road, I think I may have killed a butterfly)Allie: In Boo’s movie, the guy says a Hickey from Kinicki. What’s a hickey?Me (stall, stall, stall finally tell the truth): Well, you know those bruises on Rizzo’s neck? Um, well they are from Kinicki kissing her.Allie: Another reason I am never dating boys.

One last thing on this beautiful Wednesday. I have taken the plunge and am auditioning for Blogger Idol 2013. Expect a lot of groveling for votes! The perk of auditioning is that not only will my blog receive a lot of exposure, but I will receive creative and constructive criticism from the judges. So be sure to vote and vote often!﻿

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(c) Kerri Ames and Undiagnosedbutokay.com (2011 through current date). Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Kerri Ames and/or Undiagnosed but Okay with appropriate and specific direction to the original content.